What I Learned After Keeping a Symptom Journal

By Brooke Pelczynski

1 min read

Keeping track of symptoms with MS is really important for measuring how you are feeling over time and sharing that information back with your doctor. However, during bad days (or weeks, or months), keeping track of symptoms can lead to the realization that most days, you don’t feel great! Check out the comic below.

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Janus Galante Moderator
Brooke, I can relate! Unfortunately this is what my journal would look like. (With the exception of logging my injections.)
Shelby Comito Community Admin
I looooove this one, <inline-mention user-id="3956690" username="Brooke Pelczynski"/> !! I know so many here can relate. Thank you, as always, for the brilliant piece! - Shelby, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team
mummzasmith2022 Member
i can totally realate to this, i feel like shit most if not all of the time its just the type of shit i feel like that changes from day to day, is it red hot dog shit or total and utter all over human mixed with all the craps in one all at the once shit?? I cant say oh today i got up and felt normal or full of energy and back to the old me! that is never going to be a reality again! that is a memory! long gone and soon to be faded
1. Erin Rush Community Admin
 <inline-mention username="mummzasmith2022" user-id="4730529"/>, well, I wish you couldn't relate so well to the cartoon, but I hope it helps you feel a little less alone, as you are not the only one measuring how they feel in increments of . . . doody. Gentle Hugs, and may you be pleasantly surprised by some surprisingly low shit days this month! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
mummzasmith2022 Member
thank yo Erin that means so much XX
DSK40 Member
Yup..as if we need reminding of how bad we can feel day after day. I try very hard to find the good things each day..and after doing that for the last 40 years..it's harder and harder as my MS progresses...and each year I can do much less than the previous year. But this did make me laugh..so thanks for that!
tracie Member
I try to just write on my calendar- pain today , new Fentanyl patch on, pee pee pee… pain. So tired I can’t do anything …. If I do anything like take a shower that’s it for the day. So it’s showers every 3 days and sink baths inbetween. It’s gross. But I do write stuff even if it says alone all day24/7…. I don’t know if it helps but if I pass someone will know what I have been living with on a daily basis.
Happytxgrl Member
I've been told by the man I live with that I'm just being lazy. He knows I have MS and he thinks that if I would get out of bed and do some laundry and housework, I would feel better. Has others had this with a significant other? Please help me know what to say 
1. Doreen H Community Admin
 <inline-mention username="Happytxgrl" user-id="8852481"/>, It breaks my heart to hear that you are not getting the support you so need. Many in this community have shared similar frustrations and I hope some will chime in here to share their experiences and support. In the meantime, I'm sharing this article that may offer some helpful advice: https://multiplesclerosis.net/living-with-ms/seeking-support-when-you-dont-receive-it-from-home. Always know this community is here for you! Warmly, Doreen (Team Member)
Happytxgrl Member
Thank you very much for responding. I have been with this guy for almost 6 years. I told him from the beginning about the m.s. and gave him the chance to walk away. He stayed. Sometimes he just thinks he has all the answers for my symptoms and he thinks he has the reason for this disease. I just keep letting him think he is right. I try not to argue with him but he has a way of pushing my buttons. I usually get frustrated with him and this stupid disease and go for a short walk. I just hope things will be better with the new man. Whoever / wherever he might be. lol
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Happytxgrl" user-id="8852481"/> I'm sorry to hear that your experiencing this. It can be so hard for family members to truly understand the depths of this invisible disease. I'm glad that you're coming in here to connect with people who get it and can relate. I don't know if you've seen any of these articles on our site about MS and relationships but wanted to pass them along in hopes that you might find one that is helpful or resonates with you. https://multiplesclerosis.net/living-with-ms/marriage-relationships https://multiplesclerosis.net/living-with-ms/his-side-interview-with-husband https://multiplesclerosis.net/living-with-ms/became-whole-self-relationship https://multiplesclerosis.net/living-with-ms/marriage-ultimate-relationship-exam As always, take what resonates and leave what doesn't. Best Alene, moderator 
2. Erin Rush Community Admin
 <inline-mention username="Happytxgrl" user-id="8852481"/>, you deserve better. If this man is showing you who he is, believe him. NO ONE knows your MS better than you do, not even a person living with you 24/7. I hope you find someone who loves you for who you are or that your partner has an amazing change of heart and stops arguing with you about your MS. Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
Happytxgrl Member
Thanks Erin. I remember back in the beginning of being told that I had me and everyone had advice,, thinking about if "they could feel like me for 1 day". But reality is that I would never wish this disease on anyone. I think part of my problem is that I'm having symptoms and nothing seems to be helping. So I get angry at this disease. Then when he comes home in a bad mood...that just makes my anger worse. I don't blame him for everything but I have learned to not take the blame for stuff that isn't my fault. Thank you to everyone for letting me vent and know that I'm not alone anymore.
1. Erin Rush Community Admin
 <inline-mention username="Happytxgrl" user-id="8852481"/>, you are welcome to vent here anytime! And we know what a toll MS can take on a relationship. Really, as you pointed out, you're mad at the MS and your partner may very well be mad at your MS, too. But, it's really hard to take that anger out on your MS, so it ends up being turned towards a person. And again, I hope your relationship improves! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
Happytxgrl Member
<inline-mention username="Alene L. Brennan, RYT" user-id="6784970"/> . Thank you for the help. you're the second person to tell me about those articles. I can't wait to read them. I do feel better mentally for venting in here the past few days. I never knew that this sight was here. I'm so glad to find people that understand what I'm going through. The one group I went to was back in the beginning of living with m.s. I was 20 years old and didn't have a clue what to expect. I didn't go back. I know that this isn't a therapy session or anything like that. But for the first time in over 35 years, I feel like the people in here know what I'm talking about. Living with m.s. . Thank you all for listening to me rant and rave.

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